OTTAWACITIZEN.COM
A tale of two sons; The Mackintoshes were told not to worry about their older boy's development - until he was diagnosed as autistic. A new research project targeting early detection and at-home therapy has made all the difference to their second child's progress. Doug Fischer explains.
Sun October 11, 2009
Byline: Doug Fischer
OTTAWA - When Jennifer Mackintosh looks back at family videos, sometimes her heart breaks.
"At first I see a little boy who was smiling, who was perfectly happy to cuddle up, who was looking right at us," she says quietly, her hands clasped on the kitchen table.
"Then time goes by and you see that little boy gradually withdrawing into himself, looking more unhappy, sometimes looking a little confused."
And as she watches those videos, Jennifer says, she finds herself wishing she knew then about her oldest boy what she knows today.
Jennifer and her husband, David, have two young sons, Alex, five, and Nathan, two. Both boys are autistic.
That in itself is not so unusual. When one child is autistic, chances are about one in 20 that a younger sibling will be diagnosed with autism or a related condition, known under the catch-all term autism spectrum disorders. What makes the Mackintoshes somewhat unique is the striking difference in the way their sons have responded to therapy - in large part, they believe, because Nathan was so much younger when they realized he was autistic.
"We caught Nathan before he could start that retreat into himself," Jennifer says. "I'm convinced it made a big difference."
Despite their suspicions that there was something wrong with Alex when he wasn't talking at one and was only babbling at 18 months, doctors told the Mackintoshes he would outgrow the problem. It wasn't until Alex was two- and-a- half that they got a diagnosis of autism. And even then there was nowhere for them to turn for help.
"We were put on a wait list to get on a wait list," David says. "It was frustrating."
Adds Jennifer: "The news was like getting hit by a Mack truck. I got myself educated pretty quick. I had to. There really wasn't anyone to tell us what to do."
In many ways, Alex and Nathan are the ideal poster boys for a new, year-long Ottawa research project designed to identify children between one and two years of age with autism and provide free home-based training for their parents.
The $100,000 Act Early Autism Project, funded by the Provincial Centre of Excellence at CHEO and run in partnership with the Pinecrest-Queensway Community Health Centre, is a Canadian first.
Project researchers have developed a list of early signs of autism - found on posters around the city and at www.actearlyautism.ca - they hope will prompt worried parents to contact them for further screening and possible participation in the program.
They also hope that if their findings mirror those of a similar, but smaller, U.S. study that found early detection and at-home therapy had a positive impact on the development of autistic children, they will kickstart permanent programs in Ontario and across the country.
"My dream is that we increase awareness of the signs of autism and can make a strong case for widespread early screening and early treatment," says Yolanda Korneluk, an Ottawa clinical psychologist and one of the project's investigators.
Korneluk says she'd also like to make people on the front lines - physicians and day-care workers - much more aware of the red flags.
"I can't tell you how many times parents come into my office and say, I knew there was something wrong with my child when he was one, and my doctor kept telling me not to worry'," she says.
U.S. research suggests the average age of diagnosis for autism is around four-and-a-half years, a situation that is likely the same in Canada, says Robin Gaines, an Ottawa speech pathologist and the project's lead investigator.
Because autistic children can quickly develop "maladaptive behaviours" - slapping their hands, rolling cars back and forth, blinking, opening and closing doors repeatedly - to help them feel comfortable, it is important to break those patterns as soon as possible, Gaines says.
"The more entrenched their behaviours get, the harder it is to change," she says. "Those years between two and four or five can be crucial to long-term outcomes."
Equipping parents with effective at-home strategies is not the entire answer, Gaines and Korneluk say, but in the absence of enough publicly funded programs, they are an important component in dealing with the disorder.
Experts tend to agree that autistic children require 20 to 25 hours a week of therapy in order to reach their potential, says Korneluk. That can come in many forms, including speech therapy, intensive one-on-one behavioural therapy, as well as through everyday activities.
"If you can teach a parent strategies to elicit communication while they're feeding their child, or changing a diaper or playing in the park, these can really complement professional therapy," says Korneluk.
And if a family is without or waiting for professional help, then competent parental guidance becomes even more crucial.
That's something the Mackintoshes learned the hard way.
Jennifer cringes now to think how she and her husband did not respond to Alex's babbling at 18 months because it made him clam up. In fact, she says, they now know they should have repeated the sounds back to him as often as possible to encourage him to communicate.
David says it was easier to believe doctors' advice not to worry about Alex's verbal and social inadequacies because his physical development was advanced for his age. "But what was really happening is that he was stuck mentally."
When Alex was about 18 months old, an infant development worker visited his play group and asked the parents if they had concerns about their children. Jennifer told her that Alex wasn't talking, banged his head on the floor when frustrated and wasn't taking to regular food.
"I wasn't thinking autism at all," says Jennifer, 32. "I was still thinking he was developing a little differently and I wanted to know what I could do to put things back on track."
At the child worker's urging, they took Alex to the First Words clinic, a City of Ottawa program for children who aren't talking. Alex was placed on a waiting list to see a psychologist at the Ottawa Children's Treatment Centre. It was a year before he got in and was diagnosed with autism.
"It hit us very hard," Jennifer says. "We'd done research online and thought, He's too social ... he can't possibly be autistic.' "
They soon found out the short supply of publicly funded programs.
"I don't know where we'd be if we'd waited for the public programs," says David, 39. "We are very lucky our family has a great deal of resources and were able to obtain private help. Not everyone is as fortunate as we are."
At times, that amounted to $50,000 a year for speech therapy, occupational therapy and special "floor time" therapy in which a worker got down on the floor to direct Alex's play in a therapeutic way.
Today, Alex receives 24 hours a week of one-on-one intensive therapy through the Autism Intervention Program of Eastern Ontario and, with a teacher's aide, attends an integrated senior kindergarten class one day a week.
He is making slow but steady progress, according to his parents, but his future is still unclear. It's possible he could attend a regular school by next fall, but perhaps more likely he'll end up in a public school special needs program.
As for Nathan, his prognosis looks better, says David. "His trajectory holds promise. From the start, we were afraid of autism with Nathan ... always aware of the possibility."
Because siblings hold a higher chance of having autism, the Mackintoshes enrolled Nathan at nine months in a sibling monitoring program at the Hospital for Sick Children in Toronto. A diagnosis was confirmed at 21 months.
"Knowing that so soon gave us the information we needed to start therapy much earlier," David says.
And that, says Jennifer, has allowed Nathan to develop to a level that is close to where he should be for a two- and-half-year-old. "It's a big catch-up from where he was in a short time. It's been great."
Know the signs
Children with autism face varying degrees of social, communication and behavioural difficulties.
As a rule, experts say, many of the signs of autism show up in children between one and two years old. Parents who believe their child shows some of the signs are encouraged to contact the Act Early Autism Project at 613- 286- 8079 or visit the website www.actearlyautism.ca. Some of those early at-risk signs include:
Social interaction:
- Less eye gaze
- Fewer warm, joyful expressions
- Less sharing of interest or enjoyment
- Lack of response to their name
Communication:
- Lack of pointing
- Difficulty understanding simple language
- Fewer "showing" gestures
- Unusual voice pattern (odd pitch, intonation, rhythm)
- Less non-verbal communication
Behaviour and play development:
- Repetitive movements of body (especially arms, hands or fingers)
- Unusual choice of play items or ways of playing (such as spinning objects, lining up toys)
- Repeated and/or rigid routine
*Reprinted with the express permission of: “The Ottawa Citizen Group Inc.”, a division of Canwest Publishing Inc.